tag:blogger.com,1999:blog-5239665991629834606.post7016262860640572508..comments2024-02-24T21:08:24.026-06:00Comments on Positives About Negative: TNBC: The Statistics of SurvivalPatricia Prijatelhttp://www.blogger.com/profile/08346233311451068354noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-5239665991629834606.post-55636812079296380972017-05-12T11:26:58.302-05:002017-05-12T11:26:58.302-05:00Happy to find your blog and your analysis of the N...Happy to find your blog and your analysis of the NY Times article. I recall reading it when it was published. As for statistics, I've learned they don't mean much. <br /><br />I was diagnosed with TNBC in March 2012. Originally, Stage 0 per the biopsy. Stage 1A after double mastectomy with one 3mm invasion and numerous micro-invasions. No nodal involvement. The very highly ranked U.S. cancer center where I was treated said no need for chemo. But then offered CMF, telling me it could take my recurrence risk from 3% to 2%. Some staff oncologists thought I should do it. Others said the cancer was so tiny, chemo would be treating my mind -- not my body. Ultimately, I did not do the chemo as my oncologist was against it, a second opinion (in another state) said don't do it and a third opinion (in another country!) said I'd be fine without it. <br /><br />Well, 3 1/2 years later (having gone to all checkup appointments as scheduled and never having had an ultrasound of my underarm area because that's not "standard of care" for Stage 1A), I found a hard lump under my arm. Upshot -- 15 of 18 nodes positive, plus PET scan showed supraclavicular nodal involvement. Surgeon told me at 3 1/2 years from my original diagnosis, I had only a 1.7% chance of recurrence. But, it happened. So much for statistics. <br /><br />After the initial diagnosis in 2012, I lost 50 pounds and have kept it off, I did an hour of aerobic exercise nearly every day and ate almost exclusively vegetables avoiding carbs and sugar. None of that helped.<br /><br />I'm now Stage 3C. I've had 20 rounds of chemo, (AC, Taxol and Carboplatin), and five weeks of radiation. I'm now doing copper depletion therapy with an integrative oncologist. I'm hopeful and do all I can to avoid statistics. Or, I tell myself, I've always been in the tiny minority, so I'll be in the statistical minority again -- I'll survive!<br /><br />My current oncologist (I'm no longer at the former cancer center, needless to say) says CMF would not have helped given what happened. Who knows? It's all a crap shoot. I still can't believe I recurred with a 1.7% chance. Statistics -- meh. <br /><br />Thanks for your blog.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-70973751242740597702017-01-31T06:40:55.289-06:002017-01-31T06:40:55.289-06:00I am a TNBC survivor - 8 years and 3 months. I had...I am a TNBC survivor - 8 years and 3 months. I had a grade 3, 3 cm & no nodes. I declined chemo and radio and had photodynamic/sonodynamic therapy privately instead (I know this is controversial) I have had no recurrence during that time.<br /><br />I too was given recurrence stats which were largely based on Her 2 negative numbers, and at that time there was very little info on TNBC. It was treated as just one type and we now know there are more or less aggressive types of TNBC.<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-51815501966670039682016-06-21T14:01:22.187-05:002016-06-21T14:01:22.187-05:00Sending a big virtual hug! So sorry for this news....Sending a big virtual hug! So sorry for this news.Patricia Prijatelhttps://www.blogger.com/profile/08346233311451068354noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-13218174229048685492016-06-21T13:41:02.518-05:002016-06-21T13:41:02.518-05:00My nice is 37 was diagnosed in sept2016 with tnbc....My nice is 37 was diagnosed in sept2016 with tnbc. She did chemo, mastectomy had 36 lymph nodes removed in March , was getting ready to do radiation when she was told she had metastic liver and possible bone recurrence and is now stage IV. We are devastated .... Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-57077358298186754042016-06-14T16:17:17.317-05:002016-06-14T16:17:17.317-05:00those are indeed small cancers! Good for you. Exce...those are indeed small cancers! Good for you. Excellent body awareness for sure! ! I had a 4mm tumor and I am also 70. I did not do chemo and could not do radiation because it was a second primary cancer and I'd had radiation the last time. That was a year ago and I remain confident in my choice.Patricia Prijatelhttps://www.blogger.com/profile/08346233311451068354noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-83193601968788589232016-06-14T13:29:15.903-05:002016-06-14T13:29:15.903-05:00I'm so grateful to find this blog. I was diagn...I'm so grateful to find this blog. I was diagnosed with TNBC at the beginning of April,2016. I had a lumpectomy and 4 lymph nodes removed on May 13 (1.6cm and a .5 cm with clear lymph nodes). That set me at Stage 1, Grade 3. I'm turning 70 in 3 weeks. I've been encouraged to undergo radiation and chemo, but I'm not so inclined. I'm a vital senior with excellent body awareness (I found the lump that they said wouldn't have shown up on a mammogram) and am following a strict vegetarian, herbal, holistic protocol and am looking for information on survival rates of patients with similar perspectives. This is a blessing and a curse and I'm working on all aspects of my life as deeply as possible. Any feedback?Anonymoushttps://www.blogger.com/profile/12385114815016583689noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-41026473433999291342015-03-10T13:01:13.003-05:002015-03-10T13:01:13.003-05:00Agreed. My doctor had shown me something similar ...Agreed. My doctor had shown me something similar to what you are describing here.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-3867835985722380792013-08-24T21:35:23.756-05:002013-08-24T21:35:23.756-05:00That is awesome. I was also diagnosed a year ago ...That is awesome. I was also diagnosed a year ago at age 48. Had a mastectomy, without chemo. I am living life daily.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-37417785360513710842013-04-28T16:22:47.652-05:002013-04-28T16:22:47.652-05:00I am a 9 year TNBC survivor - ladies there is hope...I am a 9 year TNBC survivor - ladies there is hope! I was diagnosed at the age of 46, I decided to have a mastectomy - although chemo was recommended I couldn't go through with it....I took this as a "wakeup call" and changed my diet and lifestyle and 9years later I am able to share this story with you. Hope and blessings to all!<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-29712948913548851652011-10-25T12:28:33.273-05:002011-10-25T12:28:33.273-05:00Anon: Thanks for being my fact-checker. I apprec...Anon: Thanks for being my fact-checker. I appreciate when readers ask these kinds of questions, because they make me double-check the research. In this case, I found, in rereading the article, that the 15-year figure was not accurate. I should have focused instead on the encouraging five year rates in that study--92 percent overall survival. Survival does, interestingly, go down to 89 percent in ten years--still an excellent number. And both rates are better than for hormone-positive cancers. And researchers did not have access to Her2 data, so these are not necessarily TNBC cases. This just shows that we need to focus on our own case--that statistics can vary significantly. I have edited the article to reflect these changes. Thanks again.Patricia Prijatelhttps://www.blogger.com/profile/08346233311451068354noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-18900441172518581222011-10-24T19:41:40.319-05:002011-10-24T19:41:40.319-05:00sorry, I meant 20% for 15 years not 20.sorry, I meant 20% for 15 years not 20.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-81732295390717483042011-10-24T19:39:22.756-05:002011-10-24T19:39:22.756-05:00I am confused. It says 2A tnbc has an 11% the firs...I am confused. It says 2A tnbc has an 11% the first five years, then 0-11% through year 10 and then 20%up to year 20. I thought after 5 years triple negative has a very low recurrence rate and does not increase with time. Why a 20% after year 10 to year 20? am I misunderstanding?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-32227062335282428722011-10-22T11:34:54.223-05:002011-10-22T11:34:54.223-05:00From reading her article, she is obviously a "...From reading her article, she is obviously a "glass half empty" sort of person. I, like you, can handle 50-50 odds by assuming I will be in the 50 percent who survive! Knowing that much, plus the studies showing how diet and exercise improve our odds, gives me great hope and a feeling that I...not some study, , statistic, or other entity, can make a difference in my own life, outlook, and survival.pattihatescancerhttps://www.blogger.com/profile/14921335998853696734noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-18280119758016230452011-10-20T20:42:06.393-05:002011-10-20T20:42:06.393-05:00This was a very encouraging article. We needed som...This was a very encouraging article. We needed some positive information!<br /> A friend of mine has a TNBC blog, and she has a post stating that once recurrence happens, 3/4 of those women die, and the average survival time is 9 months. That was very scary to read. Also read that if there is alot of vascular involvement (which my mother had), it ups the risk of recurrence. <br />Again, I can't thank you enough for giving us all hope. You are the best!<br />LisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-78754318444830731542011-10-20T10:23:59.637-05:002011-10-20T10:23:59.637-05:00As always, Sue, thanks for your perspective. You ...As always, Sue, thanks for your perspective. You are correct that TNBC patients were underrepresented in older studies, which is why newer research focusing only on us is the most reliable. And statistics are generalizations, but patients are people. Still, I would have translated those 50-50 chances to mean that I would be in the healthy 50 percent. And, even if I were wrong, I would still have been happier longer.Patricia Prijatelhttps://www.blogger.com/profile/08346233311451068354noreply@blogger.comtag:blogger.com,1999:blog-5239665991629834606.post-74245652599402728272011-10-20T10:14:30.242-05:002011-10-20T10:14:30.242-05:00Perhaps she received her dismal numbers from the c...Perhaps she received her dismal numbers from the commercial for- doctor's-eyes-only site Adjuvant. I was a Stage 2A TNBC patient with no nodal involvement with a 3 cm tumor. The site said (my doctor showed me it) that I had a 70% chance of being alive in 10 years assuming I had the standard chemo and only 50% chance without it. Not very good numbers. However these numbers were by definition more than 10 years old. They lumped the her2 positives with the negatives and early stage her2 positives did not get Herceptin in those days so their even worse odds skew the results. Also no dose dense treatment 10 years ago without Neulasta.<br /><br />It is also possible she got her data from a small set of patients. Even though about 20,000 to 30,000 receive this diagnosis in the US every year, rarely do studies include very many of us.<br /><br />Thank you so much Pat for keeping an eye on all this data and the articles you post.Sue in Italia/In the Land Of Cancerhttps://www.blogger.com/profile/11146373251097877539noreply@blogger.com